Two sides of the mirror: parents' and service providers' view on the family-centredness of care for children with cerebral palsy

Background In order to best meet the needs of both families and their children with cerebral palsy, many rehabilitation service providers have adopted a family‐centred service (FCS) approach. In FCS parents are seen as experts on their child's needs, and the family and professionals collaborate in the rehabilitation process. However, parents and service providers might look at FCS from different points of view, i.e. look into the mirror from two different sides. The objective of this study was to explore the degree to which parents experience the service as being family‐centred and to which extent the service providers experience their service provision as family‐centred. Methods A translated version of The Measure of Processes of Care 20 (MPOC‐20) questionnaire was used to evaluate parents' experience of FCS, and a Measures of Processes of Care for Service Providers (MPOC‐SP) questionnaire was used to evaluate the FCS provided by professionals. Parents visiting two university hospital neuropediatric wards (n= 67) during a 2‐month period and who were willing to participate received the questionnaire. Also the service providers working on the same wards (n= 49) were invited to participate. Results A total of 53 families and 29 service providers completed the questionnaires. Both parents and professionals generally rated the FCS positively. General information was rated lowest and respectful treatment the highest by both parents and professionals. The results revealed that written information about the child's condition, the possibility to choose when to receive information, and contact with other families in the same situation are areas in need of improvement. Conclusions The possibility to regularly evaluate services both from the families' and the professionals' perspectives should be part of quality development. Providing general information is a challenge for all service providers. The MPOC questionnaires can be used to highlight important areas of improvement in FCS.     

A qualitative study of parents' experiences using family support services: applying the concept of surface and depth

United Kingdom policy and practice endorses family support for child well‐being. Achieving such support requires multi‐agency approaches that consider all aspects of parents' and children's lives and which offer practical, social and emotional help. The potential for services to make a positive impact on parents and their families will depend in part on the level and nature of engagement. In this paper, a case is made for the application of the two‐part surface and depth concept for understanding how practitioners engage with families and how they might improve the chances of supporting sustainable differences for parents and families. To illustrate, qualitative data from a review of family centre support provided by a north of England local authority are presented. The review was commissioned to explore why families often need to re‐engage with intensive support services. Data were drawn from interviews with parents (n = 18, recruited following a survey of all those registered with the service during April–May 2009) and discussions with family centre support workers (n = 4), and following thematic analysis, three dominant themes emerged – resources available, staff approach and real life – which were appraised in the light of the surface and depth concept. Much of the work with parents effectively dealt with pressing needs. This felt gratifying for both parent and worker and supported immediate service engagement. However, each noted that the more complex issues in parents' lives went unchallenged and thus the sustainability of progress in terms of parenting practice was questionable. A strengths focused approach by staff that understood needs in the context of parents' real‐life circumstances was important to parent engagement. Thus, longer term benefits from family support require practitioners to work with parents to problem solve immediate issues while also digging deeper to acknowledge and seek to resolve the more complex challenges parents face in their real lives.     

Time‐use diaries are acceptable to parents with a disabled preschool child and are helpful in understanding families' daily lives

Background In order to provide services for children with disabilities which are family focused, strengthening and enabling families in addition to meeting the child's identified needs, it is important to understand families' lives. This study investigates whether time‐use diaries can provide an acceptable tool to explore the daily lives of parents with a disabled child. Methods A precoded time‐use diary divided into 15 min time slots was designed. Father–mother pairs with a preschool child with either autism (ASD) or technology dependence (TD) were asked to complete a 7‐day diary independently, over the same time period. Each parent was then interviewed separately to ascertain their experiences of using the diary. Participants were identified through their involvement with a Child Development Centre. Results Twenty‐six parents (13 father–mother pairs) were invited to participate. Eighteen parents agreed to be involved; 16 completed the diaries and interviews. Three father–mother pairs in the ASD group and one father–mother pair in the TD group declined to be involved. One father–mother pair from the TD group withdrew from the study. Of the 18 parents who agreed to participate, 15 found the diaries acceptable and either easy or straightforward to complete. One parent with dyslexia and one who described himself as a non‐reader completed the diaries successfully, finding the colour coding helpful. Parents spent between 10 and 60 min a day completing the diaries, with the median 20–30 min. The diaries provided information on the total amount of time spent on different activities and how much time parents spent together, with their other children, at home or elsewhere. Conclusion The time‐use diaries designed for this study were acceptable to the majority of parents and provided detailed information about their daily lives.     

What parents find important in the support of a child with profound intellectual and multiple disabilities

Background The importance of a partnership between parents and professionals in the support of children with disabilities is widely acknowledged and is one of the key elements of ‘family‐centred care’. To what extent family‐centred principles are also applied to the support of persons with profound intellectual and multiple disabilities (PIMD) is not yet known. Aim The purpose of this exploratory study was to examine what parents with a child with PIMD find important in the support of their child. In addition, we examined which child or parent characteristics influence these parental opinions. Method In total, 100 parents completed an adapted version of the Measure of Processes of Care. Mean unweighted and weighted scale scores were computed. Non‐parametric tests were used to examine differences in ratings due to child (gender, age, type and number of additional disabilities, type of services used and duration of service use) and parent characteristics (gender, involvement with support and educational level). Results Parents rated situations related to ‘Respectful and Supportive Care’ and ‘Enabling and Partnership’ with averages of 7.07 and 6.87 respectively on a scale from 1 to 10. They were generally satisfied with the services provided, expressed in a mean score of 6.88 overall. The age of the child significantly affected the scores for ‘Providing Specific Information about the Child’. Parents of children in the ‘6–12 years’ age group gave significantly higher scores on this scale than did parents of children in the ‘≥17 years’ age group (U = 288, r = ?0.34). Conclusion This study shows that parents with children with PIMD find family‐centred principles in the professional support of their children important. Although the majority of parents are satisfied with the support provided for their children, a substantial minority of the parents indicated that they did not receive the support they find important.     

Building capacity for parent involvement through school-based preschool services

This study investigated whether experience with school-based preschool services would build parents' capacity for school involvement. The research design compared parent involvement in kindergarten across school sites differing in the availability of preschool services, including sites with (1) multiple, integrated school-based preschool services, including seamless child care, family support programmes, and kindergarten (MS); (2) a single preschool family support programme; and (3) no preschool services. Parent surveys were employed with 206 parents of four-year-old and five-year-old children to investigate whether the site types differed in terms of several dimensions of parents' involvement: (1) feelings of efficacy in helping their children succeed in learning, (2) perceptions of their responsibilities in communicating with the teacher, and (3) perceptions of whether their children's school works with them. Parents in the MS sites reported feeling more efficacious, more welcomed by, and more responsibility to link with the school.     

Community support for adolescent parents and their children: The parent-to-parent program in Vermont

Most adolescent parents now receive good prenatal and neonatal medical care, some receive limited amounts of parenting instruction, and increasing numbers can participate in school completion programs. But few programs address the social isolation and broad developmental disruptions that often accompany adolescent parenthood. This article describes the implementation and short-term effects of one program that does strive to meet adolescents' long-term, broad support needs. The Parent-to-Parent program is a home-based program designed to enhance the ability of adolescent parents to meet their young children's and their own developmental needs. Through long-term home visiting by specially trained local volunteers, parent group meetings, and work with local human service institutions, the program strives to (1) enhance the quality of parent-child interaction; (2) enhance the parents' ability to locate and acquire services that will help them meet basic needs; (3) enhance parent and child involvement in community life; and (4) help the parents become more aware of their own options for the future, and more capable of implementing the plans they make.     

A scoping study: children,policy and cultural shifts in homelessness services in South Australia: are children still falling through the gaps?

Homeless families are the fastest growing segment of the homelessness population. Homelessness services are often the first to know when children are at risk of disengagement with health, welfare and education services. Changes to Australian policy to explicitly attend to the needs of children are attempts to address the complexity of, and provide better outcomes for, homeless children. There are mounting levels of evidence describing some of the needs of children who are homeless. Using the scoping study methodological framework, this review of academic and grey literature identified the extent to which service providers provide for the needs of homeless children. The literature search was conducted from September 2012 to April 2013 using ProQuest, Science Direct, Sage and OVID databases. Therefore, the objectives of this scoping study were to: (i) identify the specific needs of children in homelessness; (ii) describe recent changes in policy relating to care for children in homelessness services; (iii) explore the evidence on how service providers can enact care for children in homelessness services; (iv) identify the types of practice changes that are needed to optimise outcomes for children; and (v) identify the gaps in service delivery. This article describes the Australian policy changes and explores the potential impact of subsequent sector reforms on the internal practices in front‐line homelessness services, in order to overcome structural and systemic barriers, and promote opportunities for children in homeless families. This scoping study literature review contributes to the understanding of the impact of policy change on front‐line staff and suggests possible practice changes and future research options.     

Adoptive parents' suspicion of preadoption abuse of their adopted children and the use of support services

Background Adopted children have a higher risk of developmental, mental, behavioural and social problems compared with non‐adopted children, and their use of postadoption support services is of interest. Little attention has been given to the impact of preadoption abuse on the use of these services, and therefore this study examines whether or not adoptive parents' suspicion of preadoption abuse has a significant impact on the use of support services by adopted children. Methods Data from the National Survey of Adoptive Parents, a US nationally representative survey of adopted children, were used to examine parents' suspicion of preadoption abuse and its effects on the use of postadoption support services by children aged 6–17 years (n= 1411). Statistical analyses were used to examine the relationship between suspected abuse and the use of support services while controlling for characteristics of the adopted child and adoptive parents/household. Results Seven out of 10 adopted children have used some form of support service, and a larger percentage of 6‐ to 12‐year‐old children suspected of experiencing preadoption abuse used a support service compared with children not suspected of experiencing abuse. Significant relationships existed between various types of suspected preadoption abuse and the use of different types of postadoption support services. These relationships may go unaccounted for when only examining if any preadoption abuse occurred, or if any support service was used. Conclusions The type of preadoption abuse suspected appears to play a modest role in predicting the type of postadoption support services used by an adopted child. Giving further attention to understanding the relationship between different types of preadoption abuse and types of postadoption support services may help better understand the problems and difficulties experienced by adopted children.     

To what extent do children with cerebral palsy participate in everyday life situations?

The aims of the study are to describe participation of children with cerebral palsy in everyday life situations, to investigate the relationship between participation (primary outcome variable) with child and parent characteristics (independent variables) and to compare the frequency of participation (secondary outcome variable) of children with cerebral palsy with children without disabilities. A cross‐sectional survey of parents of children with cerebral palsy in Northern Ireland was undertaken in families’ homes using standard questionnaires. Children with cerebral palsy born between 31/8/1991 and 1/4/1997 were identified from a case register of people with the condition. A total of 102 parents opted in (51% response rate). Questionnaires included the Life Habits Questionnaire (Life‐H) to measure difficulties in participation and The Frequency of Participation Questionnaire (FPQ), to measure frequency of participation with comparative data for children without disability. Overall, children with cerebral palsy participated less often than their non‐disabled peers across a number of lifestyle and cultural pursuits. Among the 102 children with cerebral palsy, participation in ‘relationships’ was the least disrupted area of everyday life and aspects of ‘school’, ‘personal care’ and ‘mobility’ were the most disrupted. Children with cerebral palsy and severe co‐impairments were significantly less likely to experience higher levels of participation in most areas of everyday life when compared to children with cerebral palsy and no severe co‐impairments. Child physical and psychological well‐being did not influence participation although higher parenting stress was significantly related to lower child participation in ‘community activities’. Participation is an important health outcome for children with cerebral palsy and should be incorporated in routine clinical practice. Professionals have a role to play both at the level of addressing individual child and family needs as well as influencing legislation and policy to ensure improved access to services and local communities.     

Early intervention services in daily family life: mothers' perceptions of ‘ideal’ versus ‘actual’ service provision

Although the occupational therapy and early intervention literature espouses a family-centred approach to intervention, families have rarely been asked about their experiences of these services. This paper describes a qualitative study that aimed to identify and explore parents' perceptions of occupational therapy services and the impact of these services in their daily family life. Ten mothers of children (aged 0–6 years) with disabilities and high support needs completed questionnaires and semi-structured, in-depth interviews. Analysis revealed that mothers thought in terms of early intervention services in general, rather than in terms of occupational therapy specifically. Mothers used early intervention services primarily to enhance their child's abilities, while considering what was best for their family and, as a lesser priority, themselves. Ideally, relaxed and friendly service providers were perceived as having a greater insight into daily family life, and therefore a greater capacity to provide services to meet family needs (e.g., flexible, home-based services). However, the mothers in this study did not experience many ‘ideal’ characteristics of services and service providers, suggesting that changes are needed in occupational therapy practice and in the education of therapists. Implications for occupational therapy education and practice are discussed in the context of the family-centred literature, and recommendations are made for future research with families. Copyright © 1998 Whurr Publishers Ltd.     

Family‐centred care: a qualitative study of Chinese and South Asian immigrant parents' experiences of care in paediatric oncology

Background Over the past two decades, there is increasing emphasis being placed upon providing family‐centred care (FCC) in paediatric oncology settings. However, there is a lack of knowledge of FCC in paediatric oncology from the perspectives of immigrant parents. The purpose of this paper is to describe Chinese and South Asian immigrant parents' experiences of FCC in paediatric oncology settings in Canada. Methods This study adopted a constructivist grounded theory approach. Fifty first generation Chinese and South Asian parents of children with cancer who were at least 6 months post‐diagnosis were recruited from six Canadian paediatric oncology centres. Interviews were conducted in English, Cantonese, Mandarin, Urdu, Punjabi or Hindi, and transcribed into English. Analysis involved line‐by‐line, focused and theoretical coding, and the use of the constant comparison method. Results Findings indicated that overall parents were highly satisfied with the care and services they received, and their experiences were reflective of the key elements of FCC. However, there were some areas of concern identified by participants: parents not perceiving themselves as a member of the medical team; inconsistency in the quality and co‐ordination of services among healthcare providers; disrespectful and mechanical manner of a few healthcare providers; and parents' discomfort with healthcare providers communicating sensitive health‐related information directly with their child. Conclusions In order to successfully provide family‐centred services to immigrant parents of children with cancer, better communication of the elements of FCC between healthcare staff and families is needed to negotiate a clear role for the parents as partners of the healthcare team. Moreover, a better understanding of how family relationships are structured in immigrant families will assist healthcare providers to balance the best interests of the child with that of the family as a unit.     

Children with special needs--1: What choices do parents have?

In the first of two articles, a health visitor for special needs children discusses the limitations of choices open to parents of a child with disabilities. Both the child and the family often suffer restricted opportunities and rigid attitudes from health and education authorities. Provision of care is often a lottery. The author outlines new policies for improving choice, taking parents' wishes into account and providing more co-ordinated services.     

失独(伤残)家庭父母医养需求及签约服务研究

目的:了解失独(伤残)家庭父母医养需求及影响因素,并基于家庭医生"1+1+1"签约服务来满足其医养需求.方法:应用生活自理量表(ADL)和老年抑郁量表(GDS)对上海市浦东新区某街道20个居委274名失独(伤残)家庭父母进行医养需求及签约服务调查,调查内容包括基本情况、生活自理能力情况、抑郁症状情况等.结果:68.2％...     

Parents' voices: ‘why and how we advocate’. A meta‐synthesis of parents' experiences of advocating for their child with autism spectrum disorder

Parenting a child with autism spectrum disorder (ASD) can be stressful, and accessing services can add to this stress. Self‐efficacy, agency and advocacy are important for parents when accessing and using services. To develop insight into parental advocacy, a meta‐synthesis was undertaken to consolidate the literature focussing on parents' experiences of advocating for their child with ASD. A qualitative meta‐synthesis was conducted. Fifteen databases were systematically searched by using key terms related to ASD, children, parents/carers, advocacy and qualitative studies. Twenty‐four studies were identified and appraised using an adapted version of the Critical Appraisal Skills Programme tool. Data were synthesized into themes through the steps of review, meta‐aggregation, integration and interpretation. Two overarching concepts emerged, illustrating both the challenging nature of advocacy and the associated personal and societal benefits. These two concepts are supported by eight themes: a life‐long, all‐encompassing challenge; advocacy as a parental coping strategy; advocacy involving working to create a future; balancing roles and needs; isolation versus support; personal impacts of advocacy; benefits of advocacy; and the barriers to advocacy. The experience of advocacy for parents with a child with ASD is complex and intensive, presenting both personal and societal benefits, as well as challenges for parents. In supporting individuals with ASD and family well‐being, service providers need to have an understanding of the advocating role of parents and ensure that opportunities exist for their voices to be heard during service delivery.     

The Concurrent and Longitudinal Effects of Child Disability Types and Health on Family Experiences

This study examines the concurrent and longitudinal effects of children’s disability types and health on family experiences, namely, parent divorce, mother’s unemployment, and receipt of social welfare. The parent and school staff survey data for 1999 and 2004 from the Special Education Elementary Longitudinal Study were analyzed, when the ages of children with disabilities ranged from 6 to 17. Weighted logistic regressions using Taylor Series Linearization were used to model the concurrent associations and longitudinal association between children’s disability types and health and family experiences. Models were adjusted to account for other children in the family with disabilities, sociodemographic characteristics, and other family experiences variables. Family experiences varied significantly by disability type in 1999. Compared with families of children with learning disabilities, parents of children with emotional disturbances were 81% more likely to get divorced, and 2.5 times more likely to receive welfare from 1999 to 2004. Mothers of children with a secondary disability were 81% more likely to be unemployed than those of children without a secondary disability. These findings indicate that specific disability types in children have an influence on family experience, and that some of those influences may persist over time. Families of children with emotional disturbances appear to be particularly at risk for negative family experiences. Clinicians, educators, and policymakers should be aware of the complex needs of families of children with disabilities when considering the types of services and supports provided to both children with disabilities and their families.     

Adoption of children with disabilities: an exploration of the issues for adoptive families

This systematic literature review is an exploration of issues for adoptive families throughout the adoption process and into the various phases of the life of the adoptive family. Although there has been much recent research related to adoption, in general, very little adoption literature addresses the often unspoken needs of families who want to adopt or have adopted children with disabilities. These families report lack of good preparation services, post-adoption support, disability specific support, educational support and assistance with managing open adoptions. Children with significant emotional, physical, sensory or mental impairments represent an increased proportion of the population of children who have been adopted. This review of literature related to adoption and disability raises awareness of those involved in adoption processes and in education, of the needs of adoptive parents, which, in turn, will impact on the well-being of families, and waiting and adopted children with disabilities.     

Imagination and integrity: decision‐making among lesbian couples to use medically provided donor insemination

This paper reports findings from a pilot study of lesbian parents in the UK who used medicalised donor insemination (DI) with unknown donors. It focuses on decision‐making processes in family construction: this includes lesbian parents' experiences with clinicians and their family stories as told to clinicians and to their young children. Findings reveal that parents' understanding of family, particularly the centrality of the lesbian couple as the key parenting relationship, is crucial. We suggest that this group of parents make considered decisions about how their family might be created. It is their perception of what family means and their desire to protect the integrity of their family that leads them to negotiate social questions, particularly in relation to the presence of a ‘father’ and the familial role/relationship of the non‐biological parent. The study calls attention to the process of respondents' reflexivity about family and their ‘doing’ of family and highlights the integrity and imagination central to becoming lesbian parents.     

A family support service for homeless children and parents: users' perspectives and characteristics

The objective of the present study was to establish the psychosocial characteristics and perspectives of 49 consecutive homeless families who received input from a new designated family support worker (FSW) post at a large statutory hostel for homeless parents and children. The FSW provided: assessment of social, educational and health needs; support and parent training; and liaison with and referral to specialist services. Measures included quantitative questionnaires (i.e. the Hospital Anxiety and Depression Scale, the Parenting Daily Hassles Scale, the Eyberg Child Behaviour Inventory, and the Health of the Nation Outcome Scales for Children and Adolescents), and a qualitative (semistructured) interview on service experiences and satisfaction. The psychosocial measures indicated high rates of parenting difficulties, mental health and related needs among children and their parents. Parenting difficulties were associated with child behaviour problems. Parents expressed satisfaction with the service whilst they were residents at the hostel, but they were often not clear about the objectives of agencies and interventions. Family support interventions have a key role in service provision for homeless and other vulnerable families by providing direct parenting interventions and ensuring that specialist agencies are appropriately involved. Family support worker involvement needs to continue when families are re-housed in the community.     

Parent and service providers' perceptions regarding the delivery of family‐centred paediatric rehabilitation services in a children's hospital

Background Family‐centred service (FCS) provision has long since been acknowledged as the ‘best‐practice’ model within paediatric rehabilitation with numerous reported benefits for both the child and their family. Although family‐centred care continues to be investigated worldwide using the Measure of Processes of Care (MPOC) survey, to date only two published studies have been conducted within an Australian context, neither of which were within a hospital setting. As a large number of Australian children attend hospital clinics to receive rehabilitation services, research that investigates FCS within this type of environment is required. This study investigated parent and service providers' perceptions of FCS provision within a large Australian metropolitan children's teaching hospital using the MPOC survey. Methods A total of 100 parents/caregivers (34% response rate) whose child had accessed hospital paediatric rehabilitation services over a 12‐month period completed the MPOC‐20 survey. Thirty‐two completed MPOC‐SP surveys (80% response rate) were received from the hospital's rehabilitation service providers. Qualitative data were sourced from service providers on their understanding of the term FCS. Results Parents' perceptions of FCS provision were generally positive, rating Respectful and Supportive Care the highest and Providing General Information the lowest. No significant differences were indentified in relation to location of residence, type of disability or number of disabilities per child. Service providers also rated Providing General Information the lowest and felt Treating People Respectfully was strength in the provision of services. Extended responses from service providers indicated that although they possessed a sound understanding of the meaning of FCS, delivering flexible and accessible services and fostering effective communication among all partners were not widely expressed themes. Conclusions These results show consistent strengths and weaknesses in FCS provision to children with disabilities and their families and the need to further address the demand for adequate provision of general information.     

Unmet Need and Problems Accessing Specialty Medical and Related Services Among Children with Special Health Care Needs

OBJECTIVES: To extend what is known about parent reports of their child's need for specialty medical and related services, unmet need, and specific types of access problems among children with special health care needs (CSHCN). METHODS: Using data from a 1998-1999 20-state survey of families of CSHCN, we examined differences in parent report of need for services by child characteristics, investigated parent report of unmet need and access problems by service area and number of services needed, and estimated the likelihood of four access problems and unmet need by child, family, and health insurance characteristics. RESULTS: Overall, the sample children had numerous service needs, although the prevalence of need varied by service type and child characteristics. Reports of unmet need were greater for older children and for children with multiple service needs, unstable health care needs or a behavioral health condition, parents who were in poor health or had more than a high school education, and families whose insurance coverage was inconsistent or lacked a secondary plan. Reports of access problems were greatest for mental health and home health services. The two most prevalent access problems were finding a skilled provider and getting enough visits. CONCLUSIONS: The results underscore the importance of finding new ways to link children with behavioral health problems to mental health services, implementing coordinated care and the other core dimensions of the medical home concept, increasing the number of specialty pediatricians and home health providers, and expanding coverage for a wider range of mental health services.